Wednesday, 26 October 2016

Today's guest post for Dysautonomia Awareness Month 2016 comes from Siobhan. It's been great to read more submissions from rural patients this year. Living in a rural area patients face unique issues regarding access to care. As most regular readers know, like Siobhan below, I have to travel for the majority of my care as local specialists who are familiar with Dysautonomia are pretty much non-existent. Telehealth is one way we could improve this situation. I have a few doctors and allied health specialists who have been willing to conduct appointments via Skype or phone, but they are still in the minority. Having just read the stats on survival rates of rural vs metropolitan cancer patients it is clear that geography is a strong and sadly negative predictor of health across many conditions and part of that is due to access to specialist care from diagnosis to treatment. We have the technology to make the lives of rural patients easier, let's use it! (May be an area of personal passion). Thanks Siobhan for sharing your story.

Siobhan is in her mid 20s and lives in country Victoria with her family, who act as carers. She put a promising career in psychology on hold to become a full-time sickie. She enjoys sewing and knitting to soothe her soul. You can read more from Siobhan at chronicallysiobhan.wordpress.com.

Imagine
a day that begins at 4.30am. You drag yourself awake, get ready and
race to the station to catch the train to the Big Smoke. After a 3.5
hr+ train ride, another obstacle awaits - navigating the city. For a
rural dweller who is used to services a brief car ride away, the
public transport and taxi services in the city can seem overwhelming.
You somehow make it to your appointment in a far flung suburb, and
wait a few hours for the privilege of spending 10 minutes with a
doctor who tells you nothing you couldn’t learn over the phone. Now
for the long trip back home, arriving at the station at 10.30pm. You
are exhausted.

This
seems like a big day for anyone. Now consider how it would feel being
a person with a disability. Sounds like an impossible challenge - but
this is the only option for treatment for many rural and regional
patients.

Healthcare
in the country is patchy at best. In my home town of Warrnambool, we
do not have dermatologists, endocrinologists, and are soon to be
without a single gastroenterologist. There is one private
psychiatrist who charges $400 a session, no rebate available. We have
only just opened a regional cancer centre in the past month. Before
then, patients had to travel to Geelong and live in rented units for
the full course of their treatment, which could be upwards of 6
weeks. The emotional and financial strain on such patients is
immense.

For
those who have complex and unusual diseases, such as dysautonomia,
the situation is bleaker. Good medical care requires a relationship
with a team that will understands your condition and will work to
coordinate your care, from GPs to specialists, surgeons and other
practitioners. But if specialised care is so far flung as to be
administered hours away from your home town, the chance of a well
coordinated management plan is slim. This is if you can find a GP who
understands your condition at all - by want of being in the country,
many GPs miss out on working and sharing knowledge with specialists
who would otherwise be able to bring them up to speed on their
patient’s unique medical conditions.

And
as for those who cannot travel for treatment? I am such a patient,
and have been for 6 years. For many of these years, I was told over
and over again by doctors in town that there was no one, no one, who
would consult with me over the phone. I was told I had to travel the
8 hour round trip to a specialist in Melbourne. Considering most days
I couldn’t leave my bed, this was an impossible ask.

Luckily,
I have found specialists in Melbourne who will consult by phone and
Skype, and my health is much better for it. The prevailing attitude
in the city is still that country patients should and will travel for
appointments. I can only hope that medical professionals will
increase their understanding of rural and regional patients and offer
more flexible methods of treatment, such as Skype appointments, to
meet their unique needs.

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